Won't ask agin after today PROMISE

[windex125]

I posted abt 2 weeks ago if anyone on the site is dealing with Mediastinal Shift, and what effects if any are they experiencing? But I did not get even one reply. I will ask one last tme and not again if there is anyone who is experiencing this I wld sure appreciate what you are dealing with and if and how you are being treated by the doctor. Surgery is out of the question for the collapsed lung, which is causing the shift. Thank You all. Pat-CF/59

 

[sweetninis]

What is meant by Mediastinal shift?

 

[sroeseler]

I posted abt 2 weeks ago if anyone on the site is dealing with Mediastinal Shift, and what effects if any are they experiencing? But I did not get even one reply. I will ask one last tme and not again if there is anyone who is experiencing this I wld sure appreciate what you are dealing with and if and how you are being treated by the doctor. Surgery is out of the question for the collapsed lung, which is causing the shift. Thank You all. Pat-CF/59

Common treatment would be remove the collapsed lung and fill the cavity with ping pong balls to fill the cavity so your chest stays open. Otherwise you may not be able to receive a double lung transplant later.

I have heard of ppl with collapsed lungs and 4-6% blood flow getting on Kalydeco and their lungs starting to improve and come back. Both are currently in the 20 something % blood flow area.

We're still stalling with surgery as well awaiting fda approval for d508 with Kalydeco

 

[Deb]

I had my left lung removed after it kept collapsing and was full of infection. I did, indeed, experience a shirt. My heart has shifted and rotated. My esophagus is now shifted and curved. My left side was filled with plasma after the surgery to help prevent too much shifting. None of these really affects me. I have been doing fine. Actually I am now much better with one lung than I was when I had the left lung that was a constant source of infection.

 

[Deb]

*Shift not shirt.

 

[kyeev]

I posted abt 2 weeks ago if anyone on the site is dealing with Mediastinal Shift, and what effects if any are they experiencing? But I did not get even one reply. I will ask one last tme and not again if there is anyone who is experiencing this I wld sure appreciate what you are dealing with and if and how you are being treated by the doctor. Surgery is out of the question for the collapsed lung, which is causing the shift. Thank You all. Pat-CF/59

Hi, I have this mediastinal shift thing too.
My left lung gave up working around 10 years ago and since then my right lung has expanded to take on the extra load.
That pushed things sideways causing the shift.
The left lung receives 5% of the blood flow to my lungs, apparently, right lung gets 95%.
It hasn't really caused any real problems.
When it was diagnosed "complete atelectasis of the left lung", I didn't really notice anything and my lung function hadn't dropped.

 

[windex125]

mediastinal shift

Thank you for the few that responded surgery is out of the question and I was just very curious if anyone else was suffering with this. My problem is everything has shifted down from the trachera I find is hard swallowing pills at times, But I've been assured the left lung which is the good lung has picked up the work for the right and is working hard, other than that there is nothing else to be done. Pat/59

Hi, I have this mediastinal shift thing too.
My left lung gave up working around 10 years ago and since then my right lung has expanded to take on the extra load.
That pushed things sideways causing the shift.
The left lung receives 5% of the blood flow to my lungs, apparently, right lung gets 95%.
It hasn't really caused any real problems.
When it was diagnosed "complete atelectasis of the left lung", I didn't really notice anything and my lung function hadn't dropped.

 

[kyeev]

Thank you for the few that responded surgery is out of the question and I was just very curious if anyone else was suffering with this. My problem is everything has shifted down from the trachera I find is hard swallowing pills at times, But I've been assured the left lung which is the good lung has picked up the work for the right and is working hard, other than that there is nothing else to be done. Pat/59

Yes, surgery was discussed to remove my lung as well, as its nothing but a cess pit apparently.
But it was decided not to do it cos of potential problems down the track for transplant.
And I wasn't sick with it at the time. Doctors motto do no harm etc.
It is a pain having to clear the left lung of sputum every day when the right lung doesn't produce very much.

Your problem sounds a bit more annoying seeing as it affects your swallowing.

 

[mmcpeck]

I would caution that with a situation such as this (full or partially collapsed lung, shifted and/or twisted mediastinum) each case is highly individual and it's unwise to generalize based on other people's experiences. Windex125, the difficulty you are having swallowing pills is likely due to shifting of your esophagus (and probably the entire mediastinum). You need to stay on top of that because that, in itself, might necessitate corrective surgery.

 

[Deb]

Every case is different but I would not rule out having the infected lung removed. My local doctors just kept treating infection after infection and trying to keep my left lung from collapsing. It was only after I went to National Jewish that it was suggested that the lung be removed. Since my right lung was very healthy it was decided that the left lung infection would eventually spill over into the right lung and was not worth the risk. I am so glad I had it removed. I have gone from doing IV meds 3-4 times a year to NO IV in over 3 years. My lung function is better than it was before the surgery (this is due to exercise to keep my right lung healthy) and I feel better than I have in years.
Yes, I would encounter problems if I ever needed a transplant but I was told my chances of living the rest of my life with one lung and not needing a transplant are very good.

 

[kyeev]

That's amazing Deb. No IVs in 3 years.
How did you find the operation?
Was there a lot of pain afterwards?

 

[Deb]

The operation went well. There was pain but nothing unbearable. I left the hospital after one week and went back to work part-time after 3 1/2 weeks. (an office job) The biggest problem I had was that I lost a lot of blood and the staff did not give me all the blood that was ordered. I was very weak and it took a while to build myself back up.
Don't regret the decision at all. I feel like a new person. I guess I was just lucky that all of my infection seemed to be in that one lung.

 

[windex125]

Thank you all and yr right mmcpeck the esophagus has shifted as well, this year I finally feel a difference when eating and have to remind myself to cut food small and chew more before swallowing there are times when I forget and all of a sudden I feel a lump stuck and hv to drink something immediately to push it down. I think to myself OMG I cld choke to death if I do not remember. Deb so glad the surgery worked for you and I maybe wld hv considered it years ago but not now. I'll be 60 next month and glad I've made it this far even though I hv quite a few issues, I still go by the one day at a time rule. I deal with it as it comes along, but I must admit I am getting more frustrated now that I am older. Pat-59